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A STUDY TO ASSESS THE ATTITUDE, STRESS AND COPING STRATEGIES OF PARENTS CARING FOR MENTALLY CHALLENGED CHILDREN IN SELECTED SPECIAL

SCHOOL OF AMBALA, HARYANA *Mrs. Kirandeep Kaur I **Mr. Yogesh Kumar

*Assistant Professor, Sigma College of Nursing, Ludhiana, Punjab, India. **Assistant Professor, M. M College, Ambala, Haryana, India.

DOI: http://doi.org/10.47211/trr.2020.v06i02.004 ABSTRACT: Mentally challenged is one of the most frequent disorders among children. Mental challenge is a disability characterized by significant limitations in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. All parents wish for a healthy baby, but some parents though not by their choice are gifted with mentally challenged child. Some are able to cope up with such a situation and some experience psychological stress. The study aimed to assess the attitude, stress and coping strategies of parents caring for mentally challenged children. A non- experimental approach was used with descriptive survey design. 70 Parents of mentally challenged children were selected from Umeed school rehabilitation centre for the intellectual disability & developmental disorders in Ambala, Haryana to carry out the study. The data was collected from parents of mentally challenged children by door to door survey by using paper-pencil technique to assess the attitude, stress and coping strategies of parents with help of structured attitude scale, questionnaire on resources and stress, ways of coping scale. Findings of the study revealed that 97% of parents were having moderately favorable attitude. 46% of parents were having severe stress, and 35.7% of parents were using accepting responsibility as ways of coping while caring for mentally challenged children. Keywords: Attitude, stress, coping strategies, parents, mentally challenged children. ABOUT AUTHORS:

Mrs. Kirandeep Kaur is Assistant Professor of Sigma College of Nursing, Ludhiana, Punjab, India.

Mr. Yogesh Kumar is Assistant Professor of M. M College, Ambala, Haryana, India.

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INTRODUCTION Mentally challenged (MC) is a condition of incomplete development of the mind, which is especially characterized by impairment of skills, manifested during the development periods. Which contribute to overall level of intelligence

1. The IQ score was the only tool to classify many children as mentally challenged.

As per WHO, MC is

defined as intellectual function significantly lower than average, with an intelligence quotient (IQ) equal to or less than 70; and poor adaptive skills in at least two of the following areas: communication, self-care, social/ interpersonal skills, self-guidance, school performance, work, leisure, health and safety; and onset of symptoms before the age of 18 yr

2. In India, disability is still viewed in terms of a “tragedy” with a “better dead than disabled”

approach, the idea being that it is not possible for disabled people to be happy or enjoy a good quality of life. In today's modern society this home-based care has resulted in many adverse consequences. Factors such as changes in the social system (e.g. breaking up of joint families) and the economic system (e.g. unemployment etc.) have contributed to the stress those parents of mentally retarded children experience

3. Mental challenge occurs in 1-3

percent of the population in United States. In India 1.67% of the 0-19 population had a disability. 35.29% of all people living with disabilities are children. Other estimates say that India has 12 million children living with disabilities. Only 1% of children with disabilities have access to school and one third of most disabilities are preventable. Under-nutrition is a severe problem with children who suffer from cerebral palsy. In India 80% of children with disabilities will not survive past age forty

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The diagnosis of mentally challenged in a child can trigger a range of emotional responses in parents & across family systems. People are often plagued with feelings of pessimism, hostility, shame, denial, projection of blame, guilt, grief, withdrawal, rejection, etc. Some people also experience helplessness, feelings of inadequacy, anger, shock and guilt whereas others go through periods of disbelief, depression and self-blame. The siblings also experience feelings of guilt, shame, and embarrassment.

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A study was conducted to investigate the parental attitude of mentally retarded children in Kolkata. Aim of the study was to review the parental attitude towards their Mentally Retarded Child. It is a survey study of involvement of family of Mentally Retarded Children. The sample consisted of 30 parents (father, mother or other) of Mentally Retarded Children of special schools and psychiatric clinics. Subjects were randomly selected from 2 Special Schools. The 36 items scale interview schedule was prepared from 53 items expressing parental attitude towards Mentally Retarded Children. The study reveals that 27 out of 30 parents have shown their favorable parental attitude which is above 50 % of the total. Rest 3 have shown unfavorable parental attitude, which is below 50 % of the total. But those who are even above 50% do not have 100% positive attitude

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A study was conducted to assess the Parents having a mentally retarded child experience a variety of ‘psychological stresses related to the child’s disability in Kerala. A total of 62 parents including both father and mother of the mentally retarded child i.e., 32 fathers and 30 mothers. To measure psychological stress –Perceived psychological Stress Life events scale for parents with Mentally Retarded Children was used. The 5-points rating scale were used for scoring for both the scales. There was no significant difference in psychological stress scores of male & female parents. [F= 0.452, P<0.504]. The mean psychological stress score of males was 111.47, and for female parents it was 125.27 which were statistically equal

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A study was conducted to examining the coping strategies of parents who have children with disabilities in Wisconsin. 89 parents were chosen as study participants. The F-COPES scale was used to assess parental coping attitudes and behaviors that are developed in response to problematic situations. The data analysis revealed that acquiring social support (M = 31) and reframing (M = 31) were the most frequently used coping strategies used by the parents. The mean of the passive appraisal subscale (M = 16) was slightly higher compared to seeking spiritual support (M = 14) and mobilizing family to acquire and accept help (M = 15). The majority of respondents utilized acquiring social support and reframing, which are highly successful strategies

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Nurses are not much aware about cognitive impairment, mental challenge and how to identify their problems and how to deal with their parents. Help to formulate guidelines for health personnel to exploring problems, faced by parents of mentally challenged children& identify their children as well as parent’s needs. OBJECTIVES To assess the attitude, stress and coping strategies of parents caring for mentally challenged children. MATERIAL AND METHODS The Non-experimental approach was adopted with descriptive survey design. The present study was conducted at Umeed School Rehabilitation centre for the intellectual disability & developmental disorders, Ambala Haryana.

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Sample for the present study includes 70 parents of mentally challenged children of selected special school of Ambala, Haryana were selected by using convenience sampling technique. The structured attitude scale, questionnaire on resources and stress, ways of coping scale was used to collect data. The cover page of the tool includes introduction of the research and researcher cum consent forum for participant for willingness. The first part of tool to prepared to assess socio-demographic data. The second tool to assess the attitude of parents, Scale consisted of 20 items with maximum score 100 & minimum score 20. Third tool to assess the stress in parents and contains 52 items with maximum score 208 & minimum score 52. Fourth tool to assess the coping strategies of parents, contains 38 items about self report measure of how individuals cope with stressful event in their life while caring for their mentally challenged children and one open-ended question was developed regarding problems of parents caring for mentally challenged children. The tools in the study were developed based on extensive review, expert’s guidance and validated by experts in the field of child health nursing, mental health nursing and psychology. The reliability of tools for attitude scale is 0.7, questionnaire on resources and stress is 0.6 & ways of coping 0.7. For the open ended question reliability done by the analysis of responses and themes were coded. Coding was done by researcher and an expert. The tools were translated in Hindi language. The translated tool was checked and refined by the Hindi literature expert for appropriateness. The pilot study was conducted on ten parents. The study proposal was approved by the ethical committee of M.M. University, Mullana, Ambala, Haryana. Written informed consent was taken from each participant. Data was collected using structured attitude scale, questionnaire on resources and stress, ways of coping from 15 oct to 14 nov. 2014 . A door to door survey was done to collect the data from the parents of mentally challenged children to assess the attitude, stress and coping strategies of parents and approximately 5-6 parents of mentally challenged children data was collected each day. RESULTS Description of sample characteristics The findings revealed that 45% parents were mother and 30% parents in the age group between 40-50 years. 65% of parents were married, 29% parents were graduate. Most of parents were working in between 6-8 hours and 31% parents spend 6-8hours with mentally challenged children. 63% parents were having 2 or more than 2 siblings and 33% parents were employed. 26% children were in the age group of 9-12 years and 45% were male children. 21% children were having cerebral palsy and most of 26% of parents had income group 5000-10,000 as their monthly income. Assessment attitude, stress, coping strategies of parents towards caring for mentally challenged children Table 1 the assessments of attitude of parents showed that the attitude scores of parents ranged from 57-84. The mean of attitude of score was 66.96 with median 67. The SD of attitude scores of parents was 4.477 which indicated that attitude scores of parents were less homogenous. The assessment of stress mean score of stress was 135.84 with SD 33.256 with median of 135 and ranged from 65-203. Assessment of mean score of coping strategies was 71.49 with SD 16.132. with median 69.5 and ranged from 43-102. Table -1 Range, Mean, Median and Standard Deviation of scores of attitude, stress and ways of coping of parents caring for mentally challenged children. N=70

Range Median Mean ± SD Attitude 57-84 67 66.96 ± 4.477 Stress 65-203 135 135.84±33.256 Coping strategies 43-102 69.5 71.49±16.132 Attitude (Maximum score)-100 Minimum score-20 Stress (Maximum score)-208 Minimum score-52

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Table -2 Frequency and Percentage distribution of parents caring for mentally challenged children in terms of levels of Attitude N=70 Level of Attitude Range Of Score f (%) Favorable (> 75%) 00 Moderate favorable (50-75%) 68(97) Unfavorable (<50%) 02(03) Maximum score-100 Minimum score-20 The data presented in table 2 indicate that majority (97%) parents were having moderately favorable attitude and 03% parents were having unfavorable attitude towards caring for mentally challenged children .This reveals that most of parents were having moderate attitude caring for their mentally challenged children. and no parents was found to have favorable attitude. TABLE -3 Frequency and Percentage distribution of parents caring for mentally challenged children in terms of levels of stress N=70

Level Of Stress Range Of Score f (% )

No stress 1-52 0(0)

Minimal stress 53-104 14(20)

Moderate stress 105-156 32(46)

Severe stress 157-208 24(34) Maximum score-208 Minimum score-52 The data presented in table 13 indicate the level of stress in parents caring for mentally challenged children. 46% of parents were having moderate stress, 34% having severe stress and 20% were having minimal stress. This reveals that most of the parents were having moderate level of stress in caring for mentally challenged children. Table- 4 Frequency and Percentage distribution of parents of mentally challenged children on ways of coping sub scales

N=70 Subscale of ways of coping frequency (%) Confrontive coping 15(21.4) Distancing 20(28.5) Self controlling 10(14.3) Seeking social support 14(20) Accepting responsibility 25(35.7) Escape-avoidance 16(22.8) Plan problem solving 14(20) Positive reappraisal 18(25.7) The data presented in table 4 indicates that 35.7% of parents were using “Accepting responsibility”, 21.4% of parents using “confrontive coping”, 28.5% of parents using distancing, 14.3% of parents using “self controlling”,22.8% of parents using “escape-avoidance”, 20% of parents using “plan problem solving” 25.7% of parents using “positive reappraisal” as a ways of coping while care for their mentally challenged children.

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RELATIONSHIP BETWEEN ATTITUDE, STRESS AND WAYS OF COPING AMONG PARENTS CARING FOR MENTALLY CHALLENGED CHILDREN Table-5 Matrix of correlation between attitude, stress and coping strategies of parents caring for mentally challenged children N=70

Correlation matrix

Coping strategies Stress Attitude

Attitude -0.058NS

Coping strategies -0.053NS

Stress -0.063NS

r (68) = 0.235, NS-not significant(p>0.05) The correlation between attitude scores and coping strategies scores obtained by parents of mentally challenged children was (0.058) suggesting negative correlation between coping strategies score and attitude score. Between attitude scores and stress scores obtained parents of mentally challenged children was (-0.063) suggesting negative correlation between stress score and attitude score. Coping strategies scores and stress scores obtained parents of mentally challenged children was (-0.053) suggesting negative correlation between stress score and coping strategies score. The computed ‘r’ value between coping strategies score and attitude score and stress score obtained by parents were not significant at 0.05 level of significance ASSOCIATION OF LEVELS OF ATTITUDE, STRESS AND WAYS OF COPING WITH SELECTED SAMPLE CHARACTERISTICS The association of attitude score shows the computed chi square values of sample characteristics and level of attitude of parents caring for mentally challenged children. The computed chi square values of sample characteristics (father’s age, mother’s age, marital status, educational status of father, educational status of mother, working hours of parents, time spend with child, number of siblings, occupational status of mother, occupational status of father, child’s age, child gender, child disability, income of parents) in association with level of attitude score of parents were statistically significantly at 0.05 level of significance. It donates the association of level of attitude score and sample characteristics. It concludes that time spends with children (17.672) & employments of parents (8.704) were statistically significant at 0.05% level of significance. The association of stress score and ways of coping shows that computed chi square values of sample characteristics with level of stress, coping strategies of parents caring for mentally challenged children were not significant at 0.05% level of significance. QUALITATIVE ANALYSIS (PROBLEMS OF PARENTS CARING FOR MENTALLY CHALLENGED CHILDREN) Most of the parents shared their problems caring for mentally challenged children. Majority of parents shared their problems regarding studies, children’s inability to recall the previously learned things, difficulty in communication, unable to maintain personal hygiene, unable to speak clearly. Most parents worried about child uncertain future and Majority of parents expressed their feeling regarding children future, and their responsibilities towards their mentally challenged children for full life. DISCUSSION The findings of present study, 70 out of 68 parents having moderate favorable attitude, Rest of the 3 parents have shown unfavorable attitude, caring for mentally challenged children. The present study findings were consistent with the findings revealed attitude of parents caring for mentally challenged children by “Dr. Sribas Goswani”

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suggests that 27 out of 30 parents have shown their favorable parental attitude which is above 50 % of the total score for study. Rest of the 3 have shown unfavorable parental attitude, which is below 50 % of the total score for study. Those parents who have scored above 50% do not have 100% positive parental attitude. In the present study, 70 out of 68.6% parents were agreed on statement “ I have accepted the fact my child is mentally challenged. These findings were consistent with the study findings of “Nancy Govender”

11 where 48% of

parents agreed in acceptance of mentally challenged children. In present study, 64.3% of parents were embarrassed when people ask question about their mentally challenged children. These findings were consistent with the study findings of “Nancy Govender” 45% of parents were embarrassed when people ask question about their mentally challenged children.

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In present study the mean stress score in parents caring for mentally challenged children is 135.4 which were inconsistent with the findings of Harish Arora & Rajdeep Kaur

12 that the mean for stress in parents caring for

mentally challenged children is 2.27 which indicated minimal to moderate stress. In the present study, there was significant association between times spend with children and attitude of parents (17.62) which was found consistent with the study findings of Nabawy Ahmed Moawad EL

13 that there was

significant association between times spend with children and attitude of parents (18.02). It is concluded that parents expressed the emotions of disappointment towards their mentally challenged children and assesses a high number of Parents positive attitudes towards their children. However, the attitudes of the parents towards mentally challenged children were affected by their individual knowledge, beliefs and perceptions. Parents also felt increase demands for time and financial resources add a heavy burden of stress. Some parents consider the mentally challenged children as a burden and feel ashamed of them, yet majority of them consider it as their duty to take care of such children. They loved and accepted their children with mentally challenged. The present study concluded that, the most of parents reported that, using more than one coping methods is more beneficial in dealing with their children with special needs. The most used coping strategies were acquiring social support followed by positive reappraisal. Parents also expressed their difficulty during care giving activities. Mostly parents worried about child uncertain future and Majority of parents expressed their feeling regarding children future, and their responsibilities towards their mentally challenged children for full life. REFERENCES

1. Accordo PJ , capute AJ. Mental retardations. disabilities 1998 p-2-5 2. US Department of Education. To assure the free appropriate public education of all children with

disabilities: sixteenth annual report to Congress on the implementation of the Individuals with Disabilities Education Act. Washington, DC: US Department of Education, 1994.

3. Frankenberger W, Harper J. State definitions and procedures for identifying children with mental retardation: comparisons of 1981-1986 guidelines. Ment Retard 1988;26:133-6.

4. Dutt, G. (2001). Social acceptance and problems associated with Mental Retardation. Indian Educational Abstracts. Vol. 8, No-1.

5. Vidhya R. and Raju, S (2007). Adjustment and Attitude of Parents of Children with Mental Retardation. Journal of the Indian Academy of Applied Psychology.

6. Dr. Sribas Goswami. The parental attitude of mentally retarded children. Global journal of human social science arts & humanities. 2013.vol13.10-13.

7. Venkatesh Kumar G. Psychological Stress and Coping Strategies of the Parents of Mentally Challenged Children. Journal of the Indian Academy of Applied Psychology. July 2008.Vol. 34. 227-231.

8. Hossein Jenaabadi. The study and comparison of stress levels and coping strategies in parents of exceptional (mentally retarded, blind and deaf) and normal children in Zahedan: study 2013 .Available from: www.sciencedirect.com./content/ the study and comparison of stress levels and coping strategies in parents of exceptional (mentally retarded, blind and deaf) and normal children in Zahedan.

9. Dr. Sribas Goswami. The parental attitude of mentally retarded children. Global journal of human social science arts & humanities. 2013.vol13.10-13.

10. Nancy Govender . Attitudes of parents towards their mentally retarded children: a rural area examination. January 2002.

11. Rajdeep kaur, Harish Arora (department of psychiatry, civil hospital, Gurdaspur, Punjab).attitudes of family members towards mentally handicapped children and family burden. Delhi psychiatryjournal. Vol.13 No.1.

12. Gehan EL Nabawy Ahmed Moawad (Ph.D.)(Lecturer of Pediatric Nursing , Faculty of Nursing Mansoura University , Egypt) .coping strategies of mothers having children with special needs. Journal of biology , agriculture and health care ISSN 2224-3208 vol 2,No.8 , 2012.

13. Amy Pritzlaff.examining the coping strategies of parents who have children with disabilities. August 2011